I am starting Provenge soon

[de-luke]

Greetings all!

I am gong on Provenge at Mt Sinai NYC in the next few weeks.

Any experiences, tips, pit falls to share with me?

provenge.com/immunotherapy-...

[Magnus1964]

I didn't have any side effects and responded well. I hated that port sticking out of my chest.

[GeorgeGlass in reply to Magnus1964]

Was it helpful at slowing the cancer?

[Shooter1]

Get the port. Much easier for technicians to pull and put back blood cells... I started without a port and they had a hard time so port was ordered anyhow....

[Grumpyswife in reply to Shooter1]

My husband would disagree with that comment. He hated that port. Getting the port was the worse part of it for him. We had to finish his treatment in Minnesota due to a hurricane. Minnesota had done the trial for Provenge and thought the port unnecessary and ridiculous in his case. Maybe if your veins are poor.

[MateoBeach]

If you have nice big peripheral veins you may not need a port. I didn’t. Just make sure to be there in time for the reinfusion of your PC fighting ninja T cells. 🥷

[GeorgeGlass in reply to MateoBeach]

MB did Provenge work slow The growth?

[MateoBeach in reply to GeorgeGlass]

Twelve years later and still here and alive. Just get it. Don’t leave it on the table.

[CAMPSOUPS in reply to MateoBeach]

I wonder or hope maybe is it still a good treatment when one is having chemo for the 2nd time in journey to re-sensitize after failure of 2nd line ADT?(Jevtana, Carboplatin, Provenge)?

[MateoBeach in reply to CAMPSOUPS]

Good thoughts, at least in theory. The chemo will be killing very many cancer cells providing more antigen that may enhance the immune activity of the treated T cells. Crossover effect to go after remaining live cancer cells. Called the abscopal effect.

[CAMPSOUPS in reply to MateoBeach]

Thanks Paul. I guess if its theory insurance might not cover it lol.I am honestly getting ahead of myself though. However so far it looks like I am not an outlier when it comes to being progression free. I get about the average that men in trials got. No complaints as I could have easily passed a couple years ago.

PSA 1621, head to toe bone mets and torso lymph nodes 11/2019.

Lupron. 6 infusions dox/Taxotere finished 5/2020.

5/2021 rising (40) PSA Zytiga added to concurrent Lupron.

7/2022 rising PSA (5.8 a month ago from 1.8 nadir, next lab in 2 days).

Will go with the switch to Dexamethasone of course to try and get more time out of Zytiga but again I am thinking ahead a bit for when that fails and I may want to re-sensitize with chemo and try Xtandi so the chemo combo with provenge interests me.

[GeorgeGlass in reply to CAMPSOUPS]

Did you ever have any issues with your platelet levels or other blood tests getting too low?

[GeorgeGlass in reply to MateoBeach]

so, would it be best to do the provenge first and then chemo or 2nd Line AR? Or do the provenge after the chemo or 2nd line? Or do the provenge while on 2nd line AR?

[GeorgeGlass in reply to CAMPSOUPS]

have you had provenge yet?

[CAMPSOUPS in reply to GeorgeGlass]

No haven't.

[GeorgeGlass in reply to CAMPSOUPS]

👍

[CAMPSOUPS in reply to GeorgeGlass]

Being fully, very fully metastatic at the time of dx I had the lupron and chemo right away and started Zytiga almost a year later. Zytiga is showing signs of failing to keep PSA in check after a year of being on it so I will likely soon switch from prednisone with it to dexamethasone but when that fails I am interested in the next treatment that I shared with Mateo/Paul.

If I recall correctly Provenge is more beneficial early in lower grade dx and also no matter whether given early or later is best given with PSA 5 or below but PSA 10 may still benefit. These are just my musings and not reliable info.

[leo2634]

My best advice to give you is pee before they hook you up. It's a long boring process and you really can't move or get out of the bed or chair. I didn't get the port it's only three times and I didn't want another procedure on top of another. They are experienced at what they do the process was very easy for me. First infusion no problem, second chills, third chills and flu symptoms. The side effects only lasted about half a day. All in all out of the other treatments we are subjected to Provenge is a piece of cake. Never give up Never surrender. Leo

[GeorgeGlass in reply to leo2634]

Did it slow the pc growth and psa?

[leo2634 in reply to GeorgeGlass]

That's the thing about Provenge it doesn't really show any results other than extending life.

[GeorgeGlass in reply to leo2634]

Some study said it prolonged life? That’s good. Does it say when it’s best to take it?

[leo2634 in reply to GeorgeGlass]

My Doctor said when PSA is at a lower end number I was 0.1

[EdBar]

Get the port, I didn’t and regretted it. I’ve got good veins in my arms and it was difficult for nurses to get the flow necessary for the process. The port also allows you to use your arms while going through the 3 hour collection process. I wore some pads during collections in case I had to pee. I didn’t get any side effects until after the 3rd infusion, mild flu like symptoms that lasted a day or so.

Ed

[ctflatlander in reply to EdBar]

Good tips Ed. What was your PSA when you started and how long has it been since you had Provenge. Also were you on ADT during the process? Thank you.

[EdBar in reply to ctflatlander]

My PSA was really low, .065, I had been undetectable for a few years and it had just become detectable again. And yes, I’ve been on ADT since day one, over 8 years ago. I had Provenge this past August/September.

Ed

[GeorgeGlass in reply to EdBar]

Ed. Did provenge slow your cancer growth?

[EdBar in reply to GeorgeGlass]

It seems to have slowed the increase in PSA, typically that’s not the case except in a small percentage of men. The biggest benefit is the extra 14 months of survival time if you get treatment while your PSA is <5.

[GeorgeGlass in reply to EdBar]

Good info Ed, as usual. Thanks a lot

[pjd55d]

it is a process - bring a friend to chat with - I am glad I did it - I think it helped keep me moving forward . It was a 3 time process - remove cells on Friday - put them back on Monday - all while I was having my mouth reconstructed after a bike accident ( oy ) and just before I got on a plane for 5 weeks in Morocco and Paris - 4 years ago . So be calm

[j-o-h-n in reply to pjd55d]

Did you meet Bogey there? "Round up the same suspects"...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/11/2022 6:51 PM DST

[pjd55d in reply to j-o-h-n]

I did get to Casablanca and " Rick's America Bar " and sang " as time goes by " - maybe the Provenge helped me do that

[j-o-h-n in reply to pjd55d]

I think it must have been "Lauren" moving her hips .... Remember next time "put your lips together and blow"......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/11/2022 9:23 PM DST

[Blueslover]

My treatment wasn't a big problem. Felt a little shaky during one infusion.

[de-luke]

Thanks all of you for sharing your experience, tips and wise cracks!